Sharp Rise Seen In Identification Of Autistic Pupils

When Andrew Roth was a toddler, he displayed many of the classic
symptoms of autism: He rarely spoke, and he didn't interact with his
parents or others. Often, he appeared to be deaf, but then he would
rattle off TV jingles at random times, his mother, Elizabeth Roth,
recalls.

After he underwent myriad medical tests and his parents consulted
education agencies near their home in Olney, Md., he was diagnosed as
developmentally delayed. "All that time, no one made use of the word
'autism,' " Ms. Roth said recently.

Andrew's experience was not atypical. Until the 1980s, autistic
children were typically labeled "developmentally delayed" or "mentally
retarded.'' But when Andrew, now 19, entered elementary school in the
mid-1980s, educators were just beginning to create special programs for
autistic students, and he found his place among the rising number of
students with the condition.

In recent years, schools across the United States have faced large
increases in the number of students identified as autistic. As those
numbers continue to rise, researchers are grappling for answers, while
educators pore over their findings for guidance on teaching such
students.

U.S. Department of Education statistics show a nearly 120 percent
increase in the number of students ages 6 to 21 identified as autistic
over a recent four-year period. During the same period, the overall
number of students with disabilities rose only 13 percent.

About 15,580 students were identified as autistic in the 1992-93
school year--the first year the Education Department required states to
categorize autistic students in their data. By 1996-97, the most recent
year for which data are available, states reported a total of 34,101
students identified with autism. And that number, while only a small
proportion of the 5.2 million students with disabilities nationwide,
appears still to be rising significantly.

Dr. Marie Bristol- Power, a research administrator specializing in
autism at the National Institutes of Health in Bethesda, Md.,
attributes the rise in identified autism cases to three main reasons:
better public awareness, more extensive efforts by states to identify
youngsters with the condition, and a broader diagnostic definition of
autism that was adopted by the American Psychiatric Association in
1994. Much of the increase is also attributable to better
identification and screening methods among researchers, diagnosticians,
pediatricians, and educators, researchers say.

While the overall incidence of autism still remains "very small,"
that makes educating students with autism complex, said Louis
Danielson, the director of the Education Department division that
oversees autism research.

According to Mr. Danielson, many schools do not have a single
autistic student--and when one arrives, they are ill-prepared to create
an appropriate education plan. Autistic and other so- called
low-incidence students "often pose a challenge, particularly for small
school districts," he said.

In recent years, "we have had a lot more requests for information,
as well as a lot more requests for funding for projects on autism,"
said Gail Houle, a senior research analyst with the Education
Department's office of special education programs. "Professionals are
no doubt responding to the need."

Mechanic's Grove Elementary School in Mundelein, Ill., consulted its
local educational cooperative when its first student with autism came
through the doors three years ago.

"We have found that while we didn't know, we were able to find out,"
said Paul J. Mikulcik, the principal of the suburban Chicago school.
Now, several more autistic students attend the 624-student school, and
they are being successfully included in regular classrooms.

Federal Research

Two federal agencies--the Centers for Disease Control and Prevention
in Atlanta and the NIH--are closely studying autism, which is described
as a group of brain disorders that interferes with communication and
social skills. The CDC estimates that as many as 285,000 children and
young adults could be afflicted with the condition. There are four
times as many boys as girls identified with autism.

Researchers caution that while there are many suspected links to the
condition, including vaccines and as-yet unidentified toxins, little is
known about autism's causes or even the rates of incidence.

"We really don't know what the causes of autism are," said Dr.
Coleen Boyle, an epidemiologist and autism researcher at the CDC.

Not only that, "we can't answer questions of whether it's increasing
over time because we don't have those numbers, nor historical
evidence," Dr. Boyle added. "It used to be considered a fairly rare
condition, difficult to diagnose."

Autism is generally considered incurable--but with appropriate
treatments, children can show great improvement, and in some cases go
on to lead relatively normal lives.

The available research gives a wide range of appropriate treatments,
however. Responses can range from lifelong vitamin therapy to intensive
one-on-one behavior modification and occupational therapy. Sometimes,
the anti-depressant medication Prozac is prescribed in a child's early
years.

Each patient has unique characteristics, experts say, and his or her
condition can range from near- normal functioning to being completely
noncommunicative and severely mentally retarded.

"You can't do a medical test for autism; you can only do a behavior
test and an educational test," said Martha H. Ziegler, the
public-policy director and founder of the Federation for Children with
Special Needs, a coalition of parent-resource groups based in Boston.
"That's one reason why there's so much variation between one kid and
another."

About 80 percent of children show symptoms from birth, Dr.
Bristol-Power said. Others appear to develop normally, then
regress--and those are mainly the cases that researchers believe may be
affected by an environmental factor.

Still, "the name of the diagnosis depends on the professional you
see," Dr. Bristol-Power added. And possible previously unknown
environmental factors, such as vaccinations, have recently received
publicity.

Researchers are investigating whether a small percentage of children
may have had an allergic reaction or susceptibility to MMR shots (for
measles, mumps, and rubella) or other vaccines. Some believe that other
environmental factors may also be contributing to the rise.

Preparing Schools

Figuring out how to educate the diverse range of students with
autism has proved to be a challenge for many schools, and parents are
not always pleased with the results.

"We're getting better prepared than we were initially," said Linda
Gruehn, the principal of Bell's Ferry Elementary School in Marietta,
Ga. "As with any situation that is new, it takes time to get the
training in place."

Three years ago, Ms. Gruehn helped set up an autism inclusion
program at another elementary school to help better serve the autistic
students there.

Myrna Mandlawitz, the government-relations director for the National
Association of State Directors of Special Education, said the adequacy
of services "ranges widely from school to school."

Overall, "school districts are paying more attention ... partly
because of the push by parents, but also because of the higher
incidence," she added. "Many, many more of these kids are being
included in the regular classrooms. ... Finally, people have begun to
take a serious look at this."

In the early grades, inclusion has become the norm for most
children. And once they reach high school, they often look to training
in vocational fields. Andrew Roth, for instance, is learning computer
programming and has worked in an office, his mother said.

Still, many parents agree that much work remains to be done.

"Through elementary school, large numbers of these kids are being
serviced pretty well through inclusionary settings," Ms. Ziegler of the
Massachusetts parents' network said. "Once they hit high school, then
we run into big problems."

Autistic students, she said, usually have a hard time adapting to
high school, with its more flexible schedules, larger classes and
buildings, and less personal attention to individual students.

Researchers agree that their work should prove helpful to schools.
But with so many new findings being churned out, it's sometimes hard
for educators to comb through them and quickly disseminate the
information and put it into practice.

Barbara Gantwick, the director of special education services at the
New Jersey Department of Education, confirms that it's been difficult
to sort out the fast-growing body of research findings and help
districts determine the best educational approaches.

"It's a burgeoning field," she said. "Everyone's trying to take the
research and make it into an education practice very quickly."

And in some cases, as with other students covered by the federal
Individuals with Disabilities Education Act, administrators and parents
have waged legal battles over the kind and amount of services needed.
In one New Jersey case, for instance, a district was required to
provide 70 hours a week of therapy as part of a child's
early-intervention services, Ms. Gantwick said.

Meanwhile, the federal Education Department has commissioned a
two-year study by the National Academy of Sciences' committee on
educational interventions and autism that will look at current
treatments and determine the best practices. The study began in
January, and the NIH will bring researchers together for an annual
conference in coming weeks.

"The good news is, with early and comprehensive and individualized
services, people are finding out that there's a much more positive
prognosis for children with autism than was first thought," said
Phillip S. Strain, a professor of educational psychology at the
University of Colorado at Denver and an expert in early- childhood
interventions for autism.

"We still need a lot more education," Ms. Roth, a former board
member of the Autism Society of America, added. "A lot of professionals
don't recognize it, and a lot of parents don't want to accept that
their child has autism."

Vol. 19, Issue 8, Pages 1, 14-15

Published in Print: October 20, 1999, as Sharp Rise Seen In Identification Of Autistic Pupils

For background, previous stories, and Web links, see our Issues Page
on Inclusion.

Web Resources

The Center for the Study of Autism
posts information about autism and related disorders as well as
detailed interviews with pioneers in the field. The information is
available in several languages, including Chinese, English, Italian,
Japanese, Korean, and Spanish.

To help schools address the needs of their autistic students, the
Kentucky Department of Education put together a Technical
Assistance Manual on Autism for Kentucky Schools, 1997. The manual
covers the educational history of autistic students, strategies for
teaching autistic students, and resources for developing positive
behaviors in students with autism.

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